In Sickness and In Health Part IV: Fighting To Be Me


The hospital meds out of my system presented me with new issues. I was in constant pain. Learning to use muscles that hadn’t moved in months and now dealing with neuropathy in my lower legs and feet, especially on my right side, was a new kind of torment. Shooting, throbbing pains and a burning sensation kept me awake at night and if that didn’t keep me awake insomnia did.

The more mobile I become the less pain I was in but weekends were the worst. There was no therapy on the weekends which meant I couldn’t practice walking and by Sunday evenings the pain would be excruciating again. I wasn’t allowed to get out of bed or the wheelchair without a therapist with me because of being a fall risk.

Lack of sleep only made the problem worse because my body needed rest to heal and I was afraid to go to sleep. I’d lay awake half the night eating Lifesaver Gummies and working on detangling the knots in my hair avoiding sleep because I was afraid I wouldn’t wake up. Lifesaver Gummies was one of the few things that still tasted okay to me and it helped relieve the constant dry patch I had in the back of my throat.

Thinking about my kids would give me anxiety attacks. I had planned to have my husband bring them to the rehab center in the beginning, but discovering how bad my anxiety was made me rethink the decision. I was afraid I would have an attack and scare them plus just the thought of having to tell them goodbye and not being able to go home with them sent me on crying jags and I didn’t think they’d understand why I didn’t leave with them. They had been through enough and I didn’t want to add to their trauma. I wanted to scream each time some well meaning person tried to encourage me to have my boys brought up there. They still didn’t get just how determined I was to get out of that place in my two week deadline.

My time in the rehab seemed as though it was passing much more slowly than it actually was making me feel as though it was taking months instead of weeks. I spent a lot of my days just laying in the bed mindlessly watching TV to whatever my roommate tuned into to. I never want to hear the theme song to Law and Order again. I began closing the curtains around my bed when she had that on. My husband had brought notebooks, my Kindle, and even my laptop to me. I didn’t touch them. I didn’t want to read or write, both of which are big pastimes for me.

We found out that my feeding tube was not the kind that could be removed by the doctor bedside, but had instead been sewn in and would require another surgery. I had worked myself up to getting it removed only to find I would have to get a referral, wait on an appointment, and wait again for a surgical opening. I was terrified of being put to sleep.

My anxiety attacks still in play, I was blindsided by the respiratory therapist bringing students in to watch her remove my trach. I panicked at having so many people in my room and watching me. The skin stretching to pull the tube out of my throat stung and I cried when she was finished. I didn’t cry because of the pain and I’m still not sure why I did have tears streaming down my face as she covered the hole to protect it while it closed back on it’s own. Maybe it was relief that it was over and hadn’t been as bad as I had imagined, maybe it was fear of not having the extra security of another way to breathe if I needed it, or maybe it was the loss of something that had become a part of my body for several months. I had called my trach Aflac because of the sound it made when air randomly went through it sometimes. Until the hole healed a few days later the Aflac duck sound was still with me, more frequent and drove me up the wall.

When the trach was gone I started getting rid of everything as quickly as I could manage it. I stuffed all the trach supplies from all around my side of the room into the rolling cart they had brought in and pushed it to where they would know to take it out. I learned to transfer from bed to wheelchair and from wheelchair to the handicap seat on the toilet and I pulled the potty chair from the end of my bed to the hallway for them to take away.

All my tracheostomy supplies getting kicked out of my room!

I had a few falls while there and after the second one when I tripped over the extra length of my pajama pants trying to turn to sit on the toilet and earning myself a giant bruise on the side of my upper thigh and hip I sent all my pajama pants home and had my husband bring my athletic shorts. I tried my best to get out of that floor and back into my wheelchair or even onto the toilet but no matter how I arranged myself I could not make my leg lift me. I reluctantly pulled the emergency light string and had someone help me off the floor.

After that I told my therapist I wanted to learn how to get up and she taught me how to do a fall recovery which pissed me off because it was the first time in therapy that I had not been able to accomplish a skill. I put myself into the bathroom floor at night when it was quieter and I was less likely to be checked on and found practicing attempting to get up. Even with the bathroom rails, my wheelchair, or using the handicap toilet seat I still couldn’t do it and after shedding tears of frustration I pulled the cord for a nurse’s aide to come help me get up. A big burly guy who was really nothing more than a teddy bear with long braids helped me back into my chair when I told him why I was in the bathroom floor. He smiled and said “you really are determined to leave here.” He had no idea how it consumed my thoughts.

I mastered a fall recovery not quite a week later after I reached for the floor in the dark where my oxygen cannula had fallen when I had gotten up to go to the bathroom. I never saw that tumble out of the bed coming. After unwinding my body from around the rolling tray beside my bed I got out of the floor and into the bed on the first try.

I started parking the wheelchair at the sink and standing to brush my teeth. Until then I had not looked in a mirror and I never knew what my throat looked like with the trach in place. The skin was pinched and red at the base of my throat now and I didn’t like looking at it at all.

I was cleared to leave the rehab for outings with my husband after making sure I could transfer and get into the car with his assistance. The Wednesday before I was released from rehab I finally gave up the fight with the knots in my hair and consented to having it cut before we went out to lunch. My good friend and hairstylist cut the knots out that would not come loose no matter that nurses, therapist, aides, myself, my hairstylist, and I’ve lost track of who else had tried to unknot my hair. Between the knots to my scalp and the alopecia I had multiple bald spots on my scalp. My scalp was tender for weeks afterwards and my hair was shorter than it had ever been since I was a baby.

I was so self conscience and I HATED it. My vanity that I’ll admit to is my hair. I didn’t style it often and majority of the time it was in a ponytail but I took care of it and had nice hair that had been down to the bottoms of my shoulder blades when I woke up.

It did take me an extra week to get out of the rehab center but it wasn’t because I wasn’t ready. Everyone was ready to sign off on me from therapy and medical but insurance caused a hold up and a lot more tears for me.

My last week there was spent learning more daily living therapy skills and jumping through red tape hoops to get cleared for insurance to pay for a wheelchair and oxygen. I could walk with a walker, but not for long periods of time. In the end another friend who volunteers for a foundation that helps with disabilities came through with an oxygen concentrator, wheelchair, walker, and shower chair which guaranteed me going home to my boys


Because of the length on my COVID-19 journey you’ll have to wait for the next in the series: In Sickness and In Health Part V: Homecoming.

Previous Post: In Sickness and In Health Part III: Learning To Live Again